How much is too much to spend for life-saving medicines?

Sept. 7, 2016

Updated 6:30 a.m.

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Elena Levin of Santa Ana, 12, with her expired EpiPen Aug. 26. Her mother was unwilling to pay the $600 price for a new one . Her mother, Edith Levin, went to fill her prescription at the pharmacy she was told her share of the cost would be $600. LEONARD ORTIZ, STAFF PHOTOGRAPHER

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Elena Levin, 12, left, who has a tree nut allergy, and her mother Edith are shown with Elena's expired EpiPen Edith Levin, went to fill her daughters prescription at the pharmacy when she was told the cost would be $600. LEONARD ORTIZ, STAFF PHOTOGRAPHER

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Elena Levin of Santa Ana, 12, with her expired EpiPen Aug. 26. Her mother was unwilling to pay the $600 price for a new one . LEONARD ORTIZ, STAFF PHOTOGRAPHER

Elena Levin of Santa Ana, 12, with her expired EpiPen Aug. 26. Her mother was unwilling to pay the $600 price for a new one . Her mother, Edith Levin, went to fill her prescription at the pharmacy she was told her share of the cost would be $600.LEONARD ORTIZ, STAFF PHOTOGRAPHER

Edith Levin boiled with anger when she left her pharmacy empty-handed, unwillingto pay $600 forEpiPens to send to school with her 12-year-old daughter.

Levin hopes if other consumers similarly refuse to buy the device that treats life-threatening allergic reactions, EpiPen manufacturer Mylan will voluntarily do what regulators have not been able to accomplish – rein in skyrocketing costs.

“I’m going to roll the dice,”said Levin of Santa Ana. “Yes, it is a gamble, but it also shows the company if the sales suddenly tank that something is wrong with that strategy.

“No pharmaceutical company should have that much power over a medication like that.”

The furor over EpiPens, which deliver an injection of epinephrine to open constrained airways, is the latest example of backlash over expensive drugs sold by companies with a monopoly on their product.

Rising drug prices, particularly those of specialty drugs to treat cancer or hepatitis C, have been blamed for everything from a double-digit premium hike for California’s 2017 Obamacare policies to straining the state’s Medi-Cal budget for low-income residents.

“It speaks to the frustration of not only patients but physicians’ frustration with health care,” said Dr. Sarah Field, an allergist at Children’s Hospital of Orange County. “It reduces our capacity to empower patients with medications that we feel are the right medications. We’re driven by these forces of government or insurance to do basically what they feel is right rather than what we feel is right.”

On Wednesday, the state Legislature approved a resolution urging Congress to take action against Mylan and asking the Food and Drug Administration to reconsider denial of a competing generic alternative. In response to public pressure, Mylan announced last week that it would begin selling a generic EpiPen for half the price, $300 for a pack of two.

“We understand the deep frustration and concerns associated with the cost of EpiPen to the patient, and have always shared the public’s desire to ensure that this important product be accessible to anyone who needs it,” Mylan CEO Heather Bresch said in a statement.

But critics complained that still would cost triple the price of the EpiPen in 2007, when the company acquired the product and began increasing the price.

State Sen. Ed Hernandez, D-West Covina, who introduced the EpiPen resolution, recently withdrew a drug transparency bill that would have required manufacturers to notify purchasers – such as insurers and pharmacy benefit managers – whenever they raise prices.

He said the bill was gutted by lawmakers after intense lobbying from the pharmaceutical industry, adding that drug makers have been immune from the heat felt by insurers, hospitals and doctors to reduce health care costs.

“One area that you can’t put pressure on because of the monopolies they have is the pharmaceutical industry,” Hernandez said. “At the state level there’s not a lot we can do. We can’t change the patenting laws.”

EpiPen is hardly the first medication to spark outcry over pricing. But the familiar device has resonated powerfully in public opinion because it can save the lives of children, and families often must purchase multiple sets for home, school and day care.

Last year, the price of Daraprim, a drug used to treat parasitic disease in AIDS patients, went up more than 5,000 percent, from $13.50 a pill to $750. Earlier this year, the Massachusetts attorney general opened an inquiry into whether Northern California-based Gilead Sciences charges too much for hepatitis C drugs, at $1,000 a pill.

In May, University of Pennsylvania health economists wrote that an expedited FDA review process for generic drug applications could spur more competition.

“The business strategy of acquiring old, neglected drugs and turning them into high-priced ‘specialty drugs’ is not unique to Daraprim,” the analysis said. “The strategy works because there is too little competition for each medicine, that is, too few manufacturers make each molecular entity.

“The Office of the Inspector General found that from 2005-2014, 22 percent of the top 200 generic drugs reviewed had price increases greater than the inflation rate of brand-name drugs.”

Levin said her daughter, Elena, who is allergic to tree nuts, has never needed to use an EpiPen and has been treated with Benadryl after accidental exposure. Still, her doctor recommends that the seventh-grader have the device on hand and said not to use one that has expired.

“I feel like as a parent I can’t totally take care of her in an emergency situation,” said Levin, who has PPO insurance. “It’s something she was advised to have, and I can’t provide it for her right now.”

In 2015, a California law went into effect requiring all schools to stock EpiPens, which Mylan provides at no cost through EpiPen4School. But schools could contend with potential shortages if too many parents decline to fill their annual prescriptions.

Pamela Kahn, a registered nurse and the health and wellness coordinator for the Orange County Department of Education, said the school-supplied devices are intended for use by undiagnosed children, who in 25 percent of cases experience a reaction for the first time at school.

Kahn said more than 5,500 of Orange County’s 500,000 students have prescriptions for the device. For the last school year, preliminary data show that 41 school-issued EpiPens were used, and devices prescribed to specific students were used 115 times.

“I try to appeal to parents’ altruistic instincts,” Kahn said. “Please make sure if your child has a prescription you get that filled for your child. With the costs skyrocketing, I can understand why parents sometimes aren’t able to do that.”

Field, the CHOC allergist, said the advantage of the EpiPen is that it can be used so quickly and easily. Although most patients never have to use the device, they must refill it year after year to ensure potency.

“This is a medicine you hope nobody has to use,” Field said. “It’s like buying peace of mind.”

Kristen Iverson of Newport Beach said her 7-year-old son’s EpiPens haven’t expired, but his food allergies are so severe that Cole must always be within arm’s reach of the device.

“This will not be easy for us,” Iverson said. “We will have to give up something to get these pens, but we will get our pens.”

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